MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Coneflowers's picture
Replies 13
Last reply 10/7/2015 - 1:31pm
Replies by: Coneflowers, ldub, kylez, Kim K, Anonymous, Fen

So I have been trying to sign up on here for what seems like forever! Not sure why I was having problems...maybe it was my old computer.  Anyway, was wondering if anyone can recommend a pediatric melanoma specialist?  Yes, have more questons, but will start with this...Thank you!

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Anonymous's picture
Replies 4
Last reply 10/7/2015 - 9:20am
Replies by: Bubbles, Polymath, BrianP, Anonymous



Has anyone used this drug and what have you heard about this treatment?  I am going to see a Doctor who has tried this vaccine on patients and I don't know much about it.  

I believe this is an alternative option for Stage III Melanoma.


Thanks for any input.


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liberty04281's picture
Replies 6
Last reply 10/7/2015 - 8:51am

I finished Yervoy treatment at the beginning of April. I had scans every two months. Last scan was on Saturday and I saw my oncologist today. Lung nodules shrunk after the treatment, but there are a few very small left after the treatment. This is my third scan after I finished the treatment, and all scans so far are stable. My oncologist said it is very good, and my next scan is in three months. I do not know what to think.

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I have not been on these boards in years--but am back with a new concern.  Its beginning to look like every 4 years when this begins to fade something resurfaces to remind me...I aint in control.  Perhaps this post is more the cathartic need to write out my concerns hoping that another has been down this road before than any practical help at this point.

I have been diagnosed twice with stage 1 melanomas (2007 and 2011) on different sites; Plus 5 major dysplastic exisicions; 3 minors and countless biopsies over these past 8 years, I have sadly become numb and routine to these procedures.  However, always grateful how "minor" the melanomas were and straightforwad the treamtent plans (my prayers to those who have far more severe melanomas).

But now that we have basically run out of moles on the skin to biopsy, my eye doctor did the old "hmmmmmm" while giving me my annual exam.  She then said there is a small choroidal nevus that needs to be looked at in 2-3 months to see if there is any change.

Highly likely its just a freckle...but the old anxiety of "have they found something" was reawaken.  Not to mention the fact that this one is in my eyeball so I cannot obsessively watch over these 3 months.

So wondering if there are others who may tend towards a dysplasia nevus syndrome every gotten one in the eyeball?  Since they cannot biopsy (can they?) an eyeball freckle to figure out what it is, what can be done?


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ashleyc's picture
Replies 8
Last reply 10/6/2015 - 5:04pm

My father was diagnosed with mucosal melanoma of the nasal cavity in 2010. He was treated with surgery and radiation and had remained NED until two weeks ago where they found a recurrence further back in the nasal cavity. ENT is doing BRAF testing but its taking an extremely long time to get the results. He also referred him to Moores Cancer Center since we live in San Diego California but we couldn't get an appointment until the end of this month. Feeling hopeless waiting around with no plan and no answers. Any advice including of places where to seek out treatment would be appreciated. 

Thank you concerned daughter, 


ashley chavez

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Daisyduke's picture
Replies 6
Last reply 10/6/2015 - 11:27am
Replies by: nlac26, Anonymous, Daisyduke, jpg, geriakt

I have read about all of the side effects that go along with Interferon, what I don't know is what to expect  daily?  Do you feel the side effects for the duration you are on it or are there days that it subsides.  So do you have good days and bad days?


I have read that once you get past  the IV Injections and you go to Home Injections it gets more tolerable. Am I getting this wrong?  Are you able to work?


I know everyone is different but I don't know what to expect.  I know that any time on Interferon is better than going without.  I have also heard that taking it at bedtime helps.


I am going to see my Oncologist this week to discuss my treatment options whether it be Watch and Wait or Interferon and of course I am confused and scared,


Thanks for any input.



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gm77's picture
Replies 3
Last reply 10/6/2015 - 10:33am
Replies by: fortiz, kylez, Anonymous

Hello everyone,

my father (age 69) is currently been treated in Milan, Italy for metastatic melanoma with brain metastasis.  He has been on trial NCT02039947 ("Study to Evaluate Treatment of Dabrafenib Plus Trametinib in Subjects With BRAF Mutation-Positive Melanoma That Has Metastasized to the Brain") since January. Back then he had 3 brain mets, and many (non-countable in scans) and growing in lungs, kidneys and bowel. He had a great response: all metastasis gone from bowel, only one brain met left but now point-like, and only two small ones in the lungs (but stable since March). We are very HAPPY about the results also because he has no side effects, and is able to have a very good quality of life, including going to the gym and lap swimming 3 times a week.

Starting on month 10, the trial wants him to have scans (full body cat scan and brain MRI) monthly instead of every two months, as he has done so far. I guess it's because around this time many people on BRAF-MEK inhibitors see mets growing again since tumor develops resistance. We clearly want to stay in the trial as long as there is response, but I was wondering whether having a full body CAT scan and a brain MRI every single month is an overkill. 

Does anybody who has been on BRAF/MEK inhibitors have any experience on that? What was your scan frequency around and after month 10?

Thanks everyone in advance, and let me express my gratitude for your contributions to this forum: it is a constant source of inspiration for all of us who are living through this experience.



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Daisyduke's picture
Replies 10
Last reply 10/6/2015 - 10:18am


I too am terrified and have been reading a lot of post and gone on a lot of websites trying to learn about all of the new dugs out there.  Do I use the wait and see approach?  Do I try some of the new drugs?


I was first diagnosed with Melanoma that appeared under my nail on my big toe back in 2013.  It was originally diagnosed by my foot doctor as nail fungus ?!?!   and went untreated that way for months.  It was my dermatologist that did a biopsy that found the melanoma.  I had my left gerat toe amputated and my Lumph Nodes checked and they all came back normal.  Now 21/2 years later several uymph Nodes came back with Melanona and like others I am scared to death.


I have read that many people get second opinions, but I am going to the Cancer Treatment Center of America and I feel that I am in the right place.  I don't know if I am Stage 3 or 4 and what Imune Therapy I should try, I am so confused and I just don't want to be sick.  

I just don't like what this is doing to my family, my children are afraid that they won't have me around for their weddings or for my grandchildren.

I have an appointment next  week, what questions do I need to ask my Oncologist to move forward.  

I am so glad that there is a support group out there, I can use any and all support and guidance and I am glad you guys are out there.

Please help!!

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Anonymous's picture
Replies 2
Last reply 10/6/2015 - 7:05am
Replies by: Kim K, Anonymous

Has anyone used the Family Medical Leave Act protocol to go on short term disability at 60% of salary and also used their Social Security disability at the same time? Is that allowed (from what I can tell, I think it is but am not sure)? The SS process seems really complicated, but I am about to start treatment for stage 4 melanoma (I am post op and scans are done) and just want to know all the options before I start. 


Christine P. 

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Anonymous's picture
Replies 1
Last reply 10/5/2015 - 10:38pm
Replies by: Anonymous


I was diagnosed with Stage IIIa and had a sentinal lymphnode bioopsy in January of this year. One node was positive of the two removed and I decided, after much consideration, to move forward with the option of close monitoring, rather than interferon or full dissection or a trial. I had made this decision based on the arrangement with my doctor for CT scans or MRIs every 4-6 months. I have recently moved and in this province they apparently do not provide scans for Stage IIIa people that do not undergo treatment. I am looking for trials or other research that suggest the value of these scans. If anyone has any information it would be greatly appreciated.

Thank you.  

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Daisyduke's picture
Replies 3
Last reply 10/5/2015 - 10:14pm
Replies by: Patina, Linny, Anonymous

Can anyone recommend any medical clinics or specialists for a 2nd Opinion?  How do you get on Yervoy and does Insurance cover it?  What about  Watch and Wait.  I believe I am at III A or III B.


I need to make some decisions soon before my followup appointment.  I do not want to go on Interferon!!!!!

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I just started the Clinical Study NCT02388906.  I am stage IIIB and this trial is for either Yervoy or Opdivo with placebo for stage IIIB and above full resection of lymph nodes. 

I was told when I signed up for the study that BMS (the sponser) would cover all treatment costs that are directly related to the study and I would be responsible to pay for all "Standard of Care" for my diagnosis. 

I have had 3 infusions so far and it turns out I was billed for everything but the drugs.  Is there anyone else on this study and what were you billed for?

I would like to email privately about this to compare but I have been billed for all CT scans, all infusions (Chemo room) and all DR visits to have the DR sign off on my labs to get the infusion.  The only thing I was not billed for was the drugs.

I have to question how they can charge me for infusions since almost half can be a placebo? 

You can PM me directly.


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Chicks07's picture
Replies 5
Last reply 10/5/2015 - 3:18pm
Replies by: geriakt, Chicks07, Patina, MattF

Brand new to this.  Had a shave biopsy come back melanoma 9 days ago and just 2 days ago had wide excision surgery on my right shin.  Can someone tell me exactly what path report really means?  Like what stage?

Melanoma, level 2, .6mm tumor, T1aNxMx

I fear that I moved to fast and didn't really understand what I even was diagnosed with prior to jumping into surgery.  Maybe should have done MOHs instead? Unwrapped bandages today and my leg looks horrible, wondering what others may have encountered with surgery on the tight areas like a shin.  Don't know how to attach photos here :-)

also no testing to nodes,, this ok?



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nlac26's picture
Replies 3
Last reply 10/5/2015 - 11:55am
Replies by: nlac26, tschmith, Gene_S

I have been reading this forum since my first diagnosis with melanoma in Feburary. I have found so much helpful information and wanted to say THANK YOU for helping a scared, nervous patient understand more of this life changing event  My initial diagnosis was in Feb. 2015 and listed as stage 3B. My husband and I had just moved to Colorado and as life was busy, I didn't pay much attention to a pesky mole on my back. BIG MISTAKE. As my oncologist says, you can't think about what you should have done, but think about now and where to go forward. I hadn't been to a DR in about 5 years and with speed, I found myself going every week. My first Pet Scan revealed the melanoma had already traveled to my left arm lymph nodes. One week later I was in surgery having them removed. They also ran a Sentinel Node Biopsy on me the morning of surgery to determine where my lymphatic system ran. Since my mole sat in the middle of my back, the tracer ran to both arms. At that point, the surgeon decided to pull lymph nodes out of both of my armpits. This was all done on a Friday. I couldn't help but get weepy in the hospital thinking about all the other people in the world going on with their happy Friday, making plans for the weekend and I'm stuck in a hospital bed, I've been poked on and ran thru a scanner BEFORE being knocked out and cut on in the OR. Not a Friday I care to repeat. Surgery went well and I actually recovered remarkable well. No complications or infections, my JP drain was removed after 4 days..I was back at work within one week! Then it came time for treatment.

I read a lot on here before I started treatment to get a feel of what other patients where going thru or using. My oncologist at the time had pushed for interferon. Had I known then, what i know now, I would have opted out or picked another treatment..but being scared and feeling overwhelmed, I went with it. Everybody is different and some do fine with interferon and it's a great option for them. Me personally, wasted 6 weeks of life feeling like crap, dragging myself to the Cancer Center for the 20 "boot camp" treatments, for it to do absolutely nothing for me. It wasn't until I was to start the self injections at home, that I had a bad gut feeling about my treatment and decided to search out a 2nd opinion. My body was shot. I was having horrible anixety attacks, something I never suffered from before. My head was constantly fuzzy and achy..I was DONE with interferon. I was pointed by a client of mine to a new dermatologist and quickly made an appointment with her. She inturn, pointed me towards the Melanoma Clinic at University of Colorado Hospital. From our fist appointment there, I have been impressed!! Sometimes I kick myself for not doing better research from the begining and starting there. We moved to Colorado to live a life of outdoor adventure, leaving all our family and friends we love behind.  When you're hit with the C word, hundreds of miles away from family and you have to face it on your own, you put your faith and trust in what the DR's are telling you is right..because you have no point of reference and you're SCARED. We did what we thought was the I try not to stab myself with "why didn't I?" too often.

My new Dr and University pulled me off of interferon. In his words, " I don't give this to my patients ...I won't make you continue it" Basically I was told that it only really delays reoccurance and that's about it. Heart crushing to hear that. I put myself thru hell with that drug. For what?!!..but ya can't look back. Now as an established patient at the Melanoma Clinic, we made a plan on moving forward. I scheduled a follow up Pet Scan at my 6 month mark of diagnois and went on with my life. Every week I started to feel better as the interferon worked to leave my system. I did a lot of research on detoxing with fruit and veggies. Anything I could do to pull that junk out of my sysytem. Sept 9th 2015 my follow up Pet Scan rolled out. Matt and I traveled down to the hospital and went thru the rountine again. The next day I had my results with the DR. 

I often tried to put into words what it feels like to stare at computer images that show spots of cancer in your body..but I can't. When the Dr showed Matt and I the 2 new spots, one down by chest wall, a little further down then the last spot and one on my back..all I could do was sit there and hold my throat and Matt's hand. I kept thinking, what is happening??? My staging was moved to 4 and I felt helpless. I didn't give myself much time to process as we immedietly went into talking about new treatment. The Dr sat with Matt and I for over an hr and covered every drug and question we had. I really couldn't ask for better caregivers at that clinic.

Tomorrow, I start my first round of Yervoy. We decided this was a good choice for me and my expectations are high! I've really appreciated reading others experiences with the drug and how side effects have happened..or not in some cases. I'll go the 4 treatments every 3 weeks and be done by Christmas. I feel in great hands this go around and can't wait to go home to Missouri for Christmas with good news!! 

Thank you again to all who particiapte on this site and answer questions. There are so many eyes reading and following along that never say anything. I was one for months and months and it helped me A LOT!  THANK YOU! And if anybody else is also a patient at University of Colorado, maybe we'll meet and say hi one day! :-)



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Anonymous's picture
Replies 3
Last reply 10/4/2015 - 11:25pm
Replies by: Patina, Anonymous, arthurjedi007

Hello everyone, hope your days are brighter everyday - and may the lord be with each and everyone of you!

I had a WLE and A SLNB in 2007 - however where my WLE is located in the side/back of my thigh - I find it to be very tender and appears to be a bruise - hurts in the one spot that is discolored to the touch, I also have pain in my calf on the same leg for months now, feels like i have a charlie horse in my calf...  this pain in my calf has been going on for several several months.. ive tried drinking more water, stretching, eating banannas, ect.....  going to the Doc in 3 weeks.... but concerned if this could all be realated to the Melanoma i had in 2007 removed.  because i do have a tender spot looks like a bruise where the primary mel was removed and the calf on the same leg will not stop hurting...

any feedback?

thank you, 

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